My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path. I'm learning how to enjoy whatever path I'm on.

When I was 8 years old, my friend Gina introduced me to her grandmother. I was a very shy child anyway, but this introduction took me completely by surprise and I was speechless. How could this woman be a grandmother? She wasn’t old. She didn’t have white hair. I was convinced my friend had been cheated. This…this woman, whoever she might be, was definitely not a grandmother. At 8 years old, I didn’t know everything, but I did know what a grandmother was supposed to look like.

My grandmother was 49 years old when my mother was born. That means by the time I was born, she was in her 70’s. I never knew her before she was tiny and white haired. She was grandma. All grandmas were like this, I was sure of it. All grandmas used magnifying glasses to read the prayer cards that were kept in their little black prayer books. I was sure that if I’d peek into the little black prayer book of any grandma, the words would not be anything I could recognize, even when I was old enough to know how to read. Grandmas had a secret language. All grandmas ironed clothes with those heavy black irons that were heated on the stove and, of course, all grandmas wore corsets when they went to church, even if they needed a daughter to lace it up for them. They also had pretty dishes filled with candies and cookie jars filled with cookies. Any grandma worth anything would also have a backyard where their grandchildren could make mud pies. My grandma did. She was a grandma’s grandma.

All this came back to me last weekend when I got the call from my son saying that his wife was in labor and could I come to pick up the dogs? Two enthusiastic Labradors in the back of our car, a reassurance from our son that the midwife was there and everything was going as it should; we went home to wait for the call that would let us know that our grandbaby had arrived safely.

We waited. We waited all day and all night. We brought them some groceries that first evening and got an update. Everything was going well, just slowly. This baby was taking its own sweet time in coming into the world. They probably would have had time to get to Bethlehem…via donkey. They had opted for a home birth and while their house wasn’t much larger than a stable, it was definitely warmer and more comfortable.

We waited for another day and night and finally got a call at 6:00 am on Saturday, December 19. We were grandparents!! Our little grandson had arrived! The labor had taken just long enough that they made the decision to go to the hospital for his birth, just to make sure everything was okay. A few hours later, Chris and I were sitting in the hospital room, holding our tiny grandbaby in our arms. Nothing can compare to that.

Nothing could compare, that is, except perhaps watching our son hold his tiny baby in his arms. This was our son and he had changed right before our eyes, from a young man and husband, to a father. Our daughter-in-law had become a mother. What advice could I give them?

After watching them for awhile, I realized that there was only one bit of wisdom that I had to pass down to them. It was something that was once told to me and I hope that it is the only advice I’ve ever given that anyone has taken seriously. It is this: You are your child’s mom and dad. You know him better than anyone else ever will. You know what he needs. Don’t let anyone else try to tell you otherwise. They are adults now and are fully capable of making their way and taking care of their little family. My job now is to trust them and let them be.

Trusting John and Coco is easy. They are much stronger, more knowledgeable, and infinitely more patient than I was at their age. I listened as John calmly explained to his wailing baby, “It’s all right. You’ve just had a long trip. It’s tiring. It’s cold, too, after coming from the tropics, but this is a good place. This is a good world.” Later, I listened from the next room as Coco encouraged her little one to nurse. She has such patience! She is a singer and even her speaking voice has a beautiful, musical quality to it, especially when she speaks to the baby.

Our grandson is very lucky. He not only has a mother who sings; he also has a grandmother who sings just as beautifully. It’s not me. Coco’s mom was holding the baby and singing to him the day after he was born. When it came time for me to hold him, he looked up at me and then his eyes went straight to Coco’s mom. I knew what he was trying to tell her, “You’re not going to let HER sing to me, are you?” My own children, two of them anyway, would put their hands over my mouth whenever I made the attempt to sing a lullaby to them. I love to sing so I didn’t understand this attitude at all. My kindergarten children were a captive audience and had to listen to my singing. I was always amazed at how quickly they fell asleep at naptime when it was my turn to sing lullabies.

I never knew my grandfathers, but I know that Chris will make an excellent Grampa. He’s getting ready. He brought several books home from the library the other day. He’s on a Robert McCloskey kick and has read Blueberries for Sal, Lentil, and Journey Cake, Ho! Our grandson will like books and stories, I know that already. By the time he is ten, Chris will have introduced him to most of the classics: Dickens, Shakespeare, and P. G. Wodehouse.

I’m getting ready, too. I plan on having a pretty dish to fill with nice, organic, healthy treats. There will be cookies, too, though I won’t promise that they will be healthy. I still have my grandma’s German prayer book here. Someday our grandson will look through the prayer book and wonder at a grandmother’s secret language. He can look at it through a magnifying glass if he’d like to. He can also make mud pies in our back yard. We have plenty of mud.

The only thing I can’t do is look like my grandmother. My hair isn’t all white, though the white bit is coming in nicely. I’m not little and I’m not old. I rarely iron my clothes at all, much less with the heavy irons that were heated on the stove. I have several of the old kind. One is used as a door stop and the other two are used to press my hand made books. I don’t wear a corset either. We’ll leave that with his grandma’s grandma.

Mostly what we plan on doing is just stepping back and watching our little family grow. They’re off to a most wonderful beginning.